Posts: 17

Topic: Starting Sorafenib next week

Hey Y'all!

Looks like I have been accepted into the sorafenib trial and should get started next week. My oncologist says it's already approved and being used in renal cancer with great results - 78% have arrested growth of tumors. We're going to give this a whirl while I have some time. We may look at another clinical trial, but chemo will be the ultimate back-up.

We will make the drive from Ouray, Colorado to Dodge City, Kansas on March 15th, see the doctor on March 16th, and return home on the 17th which is St. Patrick's Day. (I'm scheduled to play in a Celtic band on that night at the Elks Club and the following night at a local restaurant, so there will be no lingering along the Santa Fe Trail on this initial trip.) We do hope to stop at Bent's Old Fort in eastern Colorado on the way there.

I got word yesterday that my insurance company will cover the clinical trial. My doctor wrote a letter to persuade/insist that they cover this. The selling point seemed to be that the drug would be free as opposed to the cost chemotherapy drugs.

Re: Starting Sorafenib next week

Dear Mike-

I spoke to Mr. Cibotti last night from New Hampshire. I have a call into ProPharmaceuticals this a.m. There's nothing on the ProPharmaceuticals or clinicaltrials.gov websites about the cholangiocarcinoma trial, only the past colon trial.

I have been off the Sorafenib trial for about a month. I am currently doing chemo with Gemzar, but I will discuss with my oncologist the possibility of going on this trial.

Re: Starting Sorafenib next week

caroline,

how are you getting on with gemcitabine - my dad is on gemcitabine and carboplatin - his oncologist has said that the tumors have not grown. The chemo wipes him out quite a bit - he has been given steroids to take for a few days post chemo, they said that the steroids taken with the anti nausea drugs works more effectively. - they gave him a real high and as my dad was not getting any nausea he stopped taking them.

What was the name of the 'contraversial' drug that you metioned? - are you going to add another drug in with the gemcitabine?

Re: Starting Sorafenib next week

Jules-

I am tolerating the gemcitabine alone quite well. I feel a little queasy in my stomach at times, but I still have a good appetitie and don't have any nausea. I do get really tired sometimes. My oncologist pointed out some things in my blood chemistry (phospates, etc.) that he said are elevated, and if they continue to go up, he wants to add another chemo drug such as Oxaliplatin (sp?) or Avastin. He said the Avastin is the one the insurance company probably won't like and might be controversial with them. I'm guessing this is because it may be more expensive.

I am going to talk to my oncologist more about the Davanat trial or trying to get it through "compassionate use". To be in the trial, I'd have to be off the gemcitabine for probably one month at least and switch to 5FU or some other chemo drug. There was a post on this site about the Davanat maybe not being effective on tumors in the liver, so I want to investigate that as well. I hope to call Pro-Pharmaceuticals on Monday and then discuss Davanat with my oncologist on Tuesday. We talked on the phone about it last week, and he is receptive to looking into it further.

Hope you and your father are doing well. Have you heard from Patricia or Mary (was that her name whose mother has CC)?

Re: Starting Sorafenib next week

caroline

I have been thinking of you, I am glad that you are tolerating the gemcitabine well. It sounds as though you have a good oncologist who is open to exploring new treatments, i think that this is half the battle - to find a doc who is willing to go for aggressive treatments - so many of them are dismissive of cc patients (we have come across good, bad and indifferent).

i have not heard from patricia recently - she very kindly emailed me some info just after she lost her husband, i do think of her often. I have not heard from susan either (i think thats who you mean - her mum is fighting cc) - she has not posted on the site for a while..

my dad is doing really well, other then a recent irritation of a hernia which has caused him a bit of discomfort. saw a surgeon who has reccommended a surgical belt as it would be difficult to operate after 2 major abdominal ops - other then that he is doing fine - he has a really good appetite, is active (goes out for long walks every day). The last scan said the tumors were not growing, so as long as the chemo is halting the disease i think we will stick with it - my dad has an option of a clinical trial at a later stage.

avastin is a great drug - has shown activity against every other type of cancer and is well worth exploring and going for - the only reason they say it is contraversial is because there is no evidence of it working against cc (this shouldn't be a reason for not giving it - they know it works on every other type of cancer - not enough research has gone into cc)

the drug in the trial that my dad has been offered is "the next avastin" - AZT71, i think it was called..the oncologist we saw about it said that it was showing "miraculous results". I don't know that much about davant - certainly sounds worth looking into - seems to be a lot on this site just lately about it...

oxyplatin is a 3rd generation platinum drug - a friend of mine had it with gemcitabine for pancreatic 4 yrs ago and is still alive and kicking (at the time he was given 3 months) - another good drug.

everybody here is world cup/football mad at the moment (apart from me) - at least it is a distraction for my dad..

Re: Starting Sorafenib next week

Hi JulesPatricia here. I look into this site almost everyday. I am really pleased that your dad is doing well. The fact that he has an appetite and is able to take exercise is excellent, he has quality of life. I guess what happens depends on how the cancer metastatises . In my husband's case he seems to have had a lot of internal bleeding high in his GI tract, that we were unaware of. The doctor thinks that the steroids for his appetite may have caused internal bleeding from an ulcer he may have had, or that the cancer spread and caused a vein/artery to leak. I get through each day by focussing on my work and in the evenings I have good friends and my family for company. We have grown closer and spend more time together now. I miss him terribly. I still have the sense of shock that this whole thing could have happened so quickly only six months from diagnosis.CC is a vicious disease When I look at this site and see some of you are having some success in fighting it, it gives me hope - even though it is too late for us.Keep fighting Jules and Jules' dad. From my experience a positive attitude is a very powerful weapon.Good luck to everyone else. Ranner, how is your father doing?

Re: Starting Sorafenib next week

Dear Patricia.

I am so sorry to hear that your husband is not here anymore. You are so right it is an awful disease. My dad is beginning to get jaundiced again but he is not keen on being admitted to hospital so one day goes by after another. So I dont know what to expect. Last time he was in hospital they said that they didnt think his body could tolerate more ercp procedures so we dont even know if they would consider changing a drain if he gets more jaundiced

I wish you all the best and please keep writing telling how you are doing.

Re: Starting Sorafenib next week

Hi Patricia,

I'm so sorry about your husband . I read all your messages and feel deeply sorry . I agree that this is an awful disease .My mother is cc and she is 71 years old. We've known about it for 2 months . We're walking through a dark road which we do not know how bad things we will come across.When it was diagnosed two months ago, because of her advanced age the doctors did not advise us a surgery . On the other hand, we are also not advised a chemo by the oncologist . They only said that leave the disease to its own course.And the disease is progressing day by day .She is eating very little and has temperature around 38 but not everyday . We give paracetamols and she is feeling better then. Also she has some abdomen difficulties. She has asciditis and this makes her uncomfortable . Patricia , do you recommend to drain it ? In one of your messges, I read about the Vitamin K is very good .Our oncologist advised us to apply it once a week. I hope she can feel better. It also prevents internal bleeding the doctor says.She also takes Milk Thistle every day .

She doesn't know anything about her disease and waiting to get well soon and making plans for the future and this makes me terribly sorry..

Do you have any comments on my mother's case ?

I wish you all the best Patricia and healthy days for you and for your family.Take care , Figen

Re: Starting Sorafenib next week

ranner

Just seen your post dated 15 June re your dad. Having personally suffered jaundice I can sympathise with how your dad is feeling but just letting it get worse is giving up on this desease - it won't fix itself. I had 2 stents fitted using ercp I agree that the procedure is extremely uncomfortable and wearing, also for me they did not work. What eventually worked for me was (a) fitting an external drain to get rid of the jaundice and (b) a month later fitting an internal metal stent to get rid of the external drain - both these procedures were done using keyhole surgery taking only 30 minutes each and with local aneasthetic, and they were very comfortable procedures - far better than ercp. Maybe your dad could consider this option ?

Re: Starting Sorafenib next week

just to add to my dad's posting above - I have been reading alot about metal stents coated with chemotheraputic agents including carboplatin as being effective, worth considering for anyone considering a stent I would have thought....

Re: Starting Sorafenib next week

Dear Jules and dad

Thank you for your advice, I havent posted for a while because dad has been in hospital. And sadly he died last thursday morning with all of us standing around his bed at home. He wanted to die at home so wednesday afternoon we managed to get him home to fullfill his wishes.

As this was not enough I have got a bloodtest back that says my ca 19-9 number is 87 and the normal is below 27 so i am not afraid I have cancer too. Unfortuneately I got the message yesterday so I can first contact my doctor on monday. I am very afraid. We just burried my dad today and I am completely numb just waiting for monday so I can get answers on what procedures I have to go through.

Re: Starting Sorafenib next week

Randi

I am so very sorry to hear about your Dad. You were a wonderful advocate for him and it must be a great comfort that you were able to bring him home and fulfill his wishes.

I am shocked to hear that you now have a health scare, I hear this so frequently from those supporting and caring for those inflicted with a life threatening disease, it really does take its toll. I do not understand the tumor markers enough to advise you, I can only hope that this is a false alarm - that somehow your body is reacting to all the emotional stress.

Re: Starting Sorafenib next week

Dear RandiI am so sorry to hear of the death of your father. You were such a good support for him and the fact that he died surrounded by his family, as he wished is something to be thankful for. When M was in the hospital there were so many people facing serious illness alone and unsupported it was tragic. I am sure your father was grateful he had a good and loving son who did his best to help.

Did you have other symptoms that made you have your blood checked? I hope that when you see your doctors they will be able to reassure you. Please keep us informed and I am thinking of you and send you my best wishes.Patricia

Re: Starting Sorafenib next week

Dear Randi,My family and I are so very sad to hear of your Dad's passing. I have been following your posts regularly and I would like to let you know that your Dad has touched our lifes a world away, in California. All our loveMarion

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